LO in denial; Adult children unwilling to hel[p

ENB

My wife refuses to accept she has any mental issues.  Blames me, our adult children, the doctors, etc. for thinking she does.  My adult children refuse to help, practicing tough love on me to make me put my LO back in a memory care faciltiy, even though her doctor there says she dows not need to be there.

sandwichone123

Welcome ENB! I'm sorry you have to be here, but you've found a helpful and welcoming community.

I see a couple of different issues here. If your wife has any form of dementia, her brain is having trouble understanding the world, including her own place in it. It is very common for out loved ones not to recognize that there is a problem with their own thinking. Usually it's not a refusal to accept, but an inability to understand the issue.

When you say your kids want you to put her back in memory care it sounds as though she was previously in one, but the facility doctor says it's not the right fit for her? Sometimes family members who aren't around all the time don't really understand what's going on, and sadly it's common for them to refuse to help.

What do you think? What circumstances led to her placement in memory care? Do you agree with the facility doctor--do you feel like you could care for her just fine at home with no risk to your own health?

ENB

I have been caring for her for a year now at home.  Three of our adult children will not have contact with us unless I place her back in a memory care facility.  Our younger daughter does have contact with us, but she in in Florida and we are in Houston.  From time to time (as now) my wife wants to divorce, saying I put her in the institution to get rid of her.  She is incapable of meeting her daily needs, so that will not work.

ENB

I get the issue of her not understanding, rather than denying reality.

Joydean

Welcome ENB! Sorry you have to be here, however you have come to a very good place for information. We are all on the same horrible road, some are further along than others. This disease will steal our love ones and if you don’t take care of yourself it will take you too. There are a lot of people on here who share their wisdom and knowledge. The word for your wife is anosognosia. This simply means she cannot recognize or is unaware of her illness. A lot of people with Alzheimer’s have this. My husband has it. We have been on this road since 2017. 

Has her doctors put her on any medication? Do you have all your legal papers in order? Like DPOA? This is one of the most important things to have done asap. 

Sorry your other kids are refusing to be part of the family. If your wife is still in the early stages, they are missing seeing their mother. This disease just gets  worse and the day will come when she will not even know them. 

I too live in Texas! 

Quilting brings calm

ENB.    Your profile states that your wife was considered an elopement risk after she was diagnosed a year ago. Is this why your offspring want you to put her back in memory care?   What behaviors are they concerned about? You mention mental issues and that your wife ‘wants a divorce’.   Does she have a diagnosis of something besides dementia?  Was tie relationship between your wife and offspring strained  before her diagnosis? 

What help do you want from them at this point?   Do you want them to relief you for a few hours at a time so that you can get some  needed time to run errands etc?   Are you wanting them to come calm her down? Do your offspring work and do  they have  children at home? 

Ed1937

ENB, welcome to the forum. You found a good one. You really need to answer the questions posted by others above.

Here is a video that should help you understand anosognosia. Why your loved one doesn't believe they have dementia- It's NOT denial. 

dayn2nite2

When I read your profile, I'm understanding that the reason she was placed was because she was an elopement risk from home, is that correct?

I find it difficult to believe that a physician at a memory care unit would say that a resident "didn't belong" there, ESPECIALLY if it was private pay.  That hurts the bottom line of the facility.  For whatever reason, you decided to bring her home.  You discussed with family, they told you exactly what to expect.  They are keeping to that.  For what it's worth, I agree with them.  You state you need help.  Then the only solution will be for you to hire help for yourself.  

I would also caution you that due to the stress of caregiving, you currently are increasing your risk of dying before her.  If you die, what do you think your children will do, take care of her?  Of course not, they will place her.

Did you attempt to find a more appropriate (locked) placement for her?  Or did you just take her home?

DrinaJGB

Wow. The judgements of others are what makes this nightmare so much harder.

dayn2nite2

DrinaJGB wrote:

Wow. The judgements of others are what makes this nightmare so much harder.

What are you referring to?  It is what it is.  You deal with what “is” and not waste energy on wishing you had kids that would help.

I see no judgment in the posts.  The responses deal in the facts.  Kids won’t help?  Then you hire.  

Quilting brings calm

I’m not judging anyone.  I’m just trying to get the ‘lay of the land’.  Answers to the questions everyone has asked so far are necessary before we can understand why the kids won’t or can’t help- or to offer relevant  advice as to get them to help.ENB is new and we don’t know enough about his situation to be helpful. 

Many of us aren’t getting help from siblings or offspring.  In my parents’  case, it’s totally understood and justified. It doesn’t make me any less resentful about it than ENB appears to be. 

easy23

My adult children did the same thing to me in 2020. I placed my DH in MC due to elopement risk and other safety concerns that were alcohol related. It was a very difficult decision to make.

After 5 weeks at MC he seemed stable and I did not feel that he was as progressed as the other residents. When I told MC that I was taking my husband out, they said that he belongs in Assisted Living, not MC. I could not see spending all of our money so early so I took him home.

My kids warned me that they would not help me and the youngest said she would never speak to me again. They were worried for both of our safety. They didn't care that I would be spending all of our money too soon. 

Everyone eventually became used to their dad being home. My youngest started talking to me again. I asked them to help watch him once when I went away overnight to visit my parents. Two of them stayed with him. I know that when I need to get more help that I will have to hire someone or place him again. They will not be there to help.

I suggest talking to a good therapist to help you sort out your family situation.

ENB

Thanks for all your replies.  In answer to some of your questions, I am not asking our children to help with care.  I simply ask they not exclude us from their lives.  I was hopeful time would see a similar result to the latest reply to my post, but it has been a year, and no sign of a thaw in our relationship seems forthcoming.  Normally, my wife needs no special needs.  Occasionally there are episodes of anger and resentment at me for placing her in a memory care unit, but it generally passes in a few hours or sometimes a day.  May has been a quiet month in that regard.  She still does not have any recognition of her limitations, and that does lead to verbal conflict. Mainly, I ignore the jibes and not react.  I do my best to contain my anger and resentment but it is hard at times.

And yes, her doctor assigned to her did advise bringing her home.  She was clearly mentally stable and no longer required such a high level of care.  My reflections over the course of the year have been that I made the right choice for us.  We swim, we walk and we socialize in our retirement community.  We are even going to church with another couple now.  None of this would she have had if she were still in the facility.  She never walked outdoors in the sun for two months while she was there.

The dilemma I now face is honesty with our neighbors and friends.  She absolutely is horrified that someone will find out the was in the institution. I know we are only as sick as our secrets, so I am troubled by this.  At the same time, I see her side of this issue.  So far I have refrained from telling anyone of our situation, but his seems wrong.  Any experience with this fromany of you? 

  

Rescue mom

I’m not clear on a lot going on here, but here’s my experience with my DH with Alzheimer’s. We live in a very dense neighborhood; I told neighbors for several reasons. 

One thing, he got lost/confused really easy, fast. If he ever got confused outside —and he got  out there a few times when I was home—they’d keep an eye on him. More eyes, the better IMO. 

And they needed to know that he could not relay any information, or promise help with anything as he used to. He used to run errands for them or help in yard. But with Alzheimer’s he might say he would, but he would not remember who/what/when, and could not drive anyway. 

Since he usually seemed so normal in a brief encounter, many thought he could do things that he really could not anymore.

Keeping any secret IME is pretty much impossible when 3 people know. DH behavior became noticably  “off” to anyone who spent much time/talked with him. I’d rather they know Alzheimer’s than speculate about other unpleasant reasons, which I later learned did happen.

Once they knew Alzheimer’s, everyone was supportive and understanding.

And I think being open helps remove stigma (which I think is going away fast anyway). Like with the Judd mama suicide, and Glen Campbell Alzheimer’s, at least family being open leads to more understanding from others. I understand not everyone wants to help in that way, but it’s something I believe myself and DH did before Alzheimer’s.

jmlarue

You aren't alone in dealing with the heartbreak of family who pulls back or completely shuts down the physical and emotional connections to a PWD. Not knowing what dynamics are in play in your family, we can only guess about the reasons why your children are being intractable. I think it's telling that they are not just distancing you, but they are distancing themselves from their mother. It's a sad fact that not everyone has had a healthy relationship with one parent or the other. If a person has a long history of creating drama and conflict within the family, it's less likely that a child or close relative will accept the responsibility of care for that person as dementia makes their behavior even more intolerable.

That being said, EVERY caregiver needs some support and a safety net to cope with the 24/7 responsibility of caring for a PWD. Since your family can't be counted on to provide that, I really encourage you to build that safety net within your retirement community or a church family. It is no good keeping your wife's condition a secret. It isn't necessary to disclose that your wife has been in a memory care facility, but it is important that you share the info with friends and neighbors that she does have some cognitive decline. You might want to go so far as to talk about how that affects her behavior so they don't misinterpret emotional mood swings, inability to remember names, or her inability to fulfill promises (to help with the next community bake sale for example). Thank them for their patience and understanding. Invite them to talk to you privately if they have any concerns about her safety or welfare. Accept whatever friendship and offers to help you may receive. And, don't forget to freely give out your phone number and address to those you trust. It's important to recognize that your wife's current state of awareness can change on a dime. One day, she could wake up and decide to go for a walk without you and find herself lost. Having friends in the neighborhood who know who she is, and where she lives, will be vitally important for getting her home safely.

Don't forget to take care of yourself while taking care of your DW. Generally, if anyone is going to fall through the cracks, it's the caregiver. Be kind to yourself and don't hesitate to come back here to the forum with any questions, concerns, or a need to vent your frustrations. Guaranteed, you'll find helpful ideas and sympathetic ears.

ButterflyWings

Hi ENB,

Glad to hear that you and your DW are in a setting that feels safe and welcoming to both. I am sorry to hear of the distancing between you and your adult children but perhaps in time that will resolve to everyone's satisfaction. It could be that this is the new normal. Good for you for listening to your wife's Dr about her abilities, and also for not engaging with her in a negative way when negativity surfaces.

I may have missed this, but did you say she had a dementia diagnosis? What we found most important was to have a thorough workup to rule out any treatable source for my DH's changes in memory and personality. Later I learned it was also cognition and judgement. He is still at home in late stages (6d) of Alzheimer's. It is not easy but so much wisdom and literal helping advice has been available right here on these boards.

If your DW spends any time alone and is a wanderer, I hope you/she will consider a bracelet and or something else to ensure she can be found easily and quickly should she become lost. If there is any dementia diagnosis, my vote is not to leave her alone, and also to hide or lose the car keys asap. The danger with driving is the judgement, cognition, and sometimes vision issues with dementia even moreso than her memory or "getting lost". 

Regarding "telling her business" as she seems to (rightfully) see it. As the other members mentioned, there are good reasons to let some people know she may behave erratically and/or need looking out for if ever seen alone. That could be done by sharing discreetly with only those who need to know, that she has mild cognitive impairment. Enough said. I can understand her concern that people may know more than they need to, about something she may not even agree with or be able to comprehend herself. There is no need to share that she was in MC. Why?

And, honestly, there are some predators or just users or haters out there who will prey on people like your wife, or be catty and unkind at minimum, if given too much unnecessary information about her condition. Think about what you are proposing to share and with whom...if you were her Dr. or lawyer, much of her personal and medical info would be illegal for you to share without her consent due to privacy issues. I have always treated this as a "need to know" basis, and many people don't necessarily need to know all, or even any, of our situation. Some need to know it all. Most of those people are bound by certain privacy laws to not share that information further. Welcome back. There is so much help and friendship here. I hope you will keep reading and posting.

ENB

Wow.  Thanks for all the support.  I will take your experiences to heart.  Thanks,

ENB

A new dilemma:  My wife's behavior is getting to the point she may need to be placed back in a memory care unit.  Our one daughter in Florida who has stayed in contact with us wants us to move my wife to a facility near to her but unfortunately my wife wants to stay here in Houston in our home.  Any thought on getting her to Florida?  I  need our daughter's support as she is an RN and having her near us will be a great benefit.

Stuck in the middle

Since her brain is broken, you will have to do what is best for her rather than what she wants.  If you think she would be better off in Florida, you should take her there.  I suggest a visit to your daughter, and a trip to memory care once you are there.  

I made a point of treating my wife as an equal for the first 50 years of our marriage, but I can't do it any more.  Not much fun, but that's how it is.  Sorry

Joydean

ENB, I’m sorry you are now looking at having to replace your wife. This has to be so very hard for both of you. Many on here have talked about making moves from one location to another. I personally have no experience in having to do that. I can only say you have to do what’s best for both of you. It does sound like moving back to Florida, where your daughter will be helpful for both of you is the best thing to do. I can and will pray for you for the right decision and strength to accomplish this. Caregiving is a very hard and lonely position to be in. I’m glad your daughter is there for you and your wife.

harshedbuzz

ENB-

I would not move a person going into MC to Florida unless I had unlimited funds to secure their care for the rest of their lives with enough left over for myself. To that end, when my own dad was diagnosed with dementia the second thing I did after I got a POA was sell his house there. 

There was a post here not long ago about best states for dementia care. Florida is not one of them. That post may have been dirty-deleted, but there's this one. I am unfamiliar with Texas although I do know disabled children who have died or aged out while awaiting Katie Becket waivers. Perhaps a good approach would be to consult a CELA in each state to get a sense of Medicaid realities before making a decision.

Alzheimers (alzconnected.org)

How, precisely, is your RN daughter going to assist in this scenario? Could she travel to vet facilities with you or offer input around meds/care via the phone? Accepting that your wife is at least med-stage with a fatal illness, is it that the RN will be looking out for your health issues?

HB